23 out of 41

Gracie has spent 23 out of the last 41 days in the hospital. She is home now, discharged last Thursday evening, following pneumonia and PICC line sepsis. She isn't 100% yet. She still doesn't sound great, she is looking "puffy" again, we are still concerned about fluid overload (on her heart and lungs), we are still concerned that the TPN, though providing proper nutrition & hydration, is causing increased secretions (simply because she is hydrated). Due to the lack of a functional swallow, the increased secretion (saliva) production translates into an increased difficulty in managing those secretions, which puts her at higher risk for aspiration.

As previously posted, there were mistakes made... lots of them... about which I won't delve into further in this forum, or at least not in this post. In any case, "concerns" (the hospital's fluffy code word for "complaints") have been filed and subsequently added-to three times, because after the initial "concerns" were filed (and posted here), the problems continued.

It goes without saying, our confidence in this Children's Hospital, regardless of its esteemed reputation, is gone. While we've had good outpatient care (with the exception of experiences with doctors with whom we didn't "click"), the inpatient care on Gracie's most recent stay was terrible. Mistakes, miscommunication, negligence - - so many things that required me to be more hyper-vigilant than ever before - - things that made us feel as though it was unsafe for us to step away even for a cup of coffee. It's astounding really, and if it hadn't happened to Gracie, I would find it difficult to believe that so many things could be done so wrong to one patient during one stay. Her safety was compromised several times; each day there were more mistakes and they were significant - - all the way through until I was handed an incorrect and incomplete discharge summary... one that left out the correct diagnosis and neglected to mention procedures performed while inpatient.

Understandably, our hearts and minds are incredibly heavy. These things shouldn't happen anywhere, but especially not at a reputable institution such as CHOC. While our sweet Gracie sits in the hospital, it shouldn't be required that we advocate for every single aspect of her care until we are blue in the face. It doesn't make sense that, as John and I pass each other for five minutes during our "changing of the guard," we communicate more effectively regarding her status and care (while also chasing a three year-old) than the doctors and nurses do during rounds or their own shift change. We shouldn't have to stand watch over nurses, residents and attendings to keep everyone on track. And while we'd never leave her unattended for any length of time, we shouldn't feel as though we can't use the restroom or get a breath of fresh air for a moment because she won't be well monitored. It was assumed we were there every minute of every day... and we were... not just because that's the choice we make as her parents, but because that's the choice we were required to make to ensure she was properly cared for.

The stress level is inexplicable. I can't really sleep, but when I do, I am literally thinking about all that is going on with Gracie. We have so many medical decisions to make, amongst many other things. A constant pulsating headache sits behind my eyes and my skin is completely riddled in breakouts from the stress. Gracie's second surgical consultation is tomorrow - - for a surgery she needs to have, and, yet, a surgery we are terrified for her to have, not just because there are no guarantees that it will work, but because we have no confidence and trust in the hospital who will "care" for her through recovery. We have private insurance that will allow us to go anywhere we choose, but it's not that simple. We certainly can't afford the copays if we choose another hospital outside of Gracie's secondary insurance network - - or out of the county. And, even if we find a way to make that work, her team of specialists who are finally getting to know her will not have privileges at another hospital. We feel trapped and helpless, we lack confidence and, as a result, we are scared.